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Potential learning disabilities/difficulties (adult)?

Androgen

Wondering if anyone has any advice/opinions on what kind of help we might be able to get for an adult with potential learning disabilities?

My brother is 23, he has moderate autism, and has severe difficulties with daily living activities, however he seems to have a normal level of intellect (in things he's interested in at least).

He's been to university, with a lot of help (specialist mentors, extra help from tutors, examples and templates for work, extra time, all the course material given in advance so he can go through it at his own pace, etc.) but all the information we've found on learning disabilities suggests that someone has to have a low IQ/lower intelligence to have a learning disability, which we think may mean he gets turned down for an assessment based on the fact that he has been to university, and is obviously capable of learning things, however he does struggle with simple things on a day to day basis, he can read, but not necessarily understand what things mean, he can't talk much, can't talk to strangers at all, he can't handle public transport, can't cook, struggles with laundry, and other simple things that should be easy for people (though he can do some things if someone is with him at the time to go through everything step-by-step, pictures help a lot as well, but he won't remember how to do it on his own next time around).

It's also been noted that he seems to be "childish" (enjoys things more aimed at children, like arts and crafts projects, Lego, stuffed animals, and games) which may be unusual.

He's currently on the GP Learning Disability Register (despite not having a diagnosis), and we're hoping to contact the local adult social care team, but we're not sure whether it would be worth attempting to pursue a diagnosis, or if maybe other people have any suggestions on what else it could be?

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Chloe_Alumni

Thank you for sharing this with us. I hope someone in the community is able to help

Geoark

Hello @Androgen

What you have described is what I would expect with the diagnosis he has. If he doesn't have learning disability I would expect he would qualify as having learning difficulties. That said I am by no means an expert.

If you don't mind me asking, what sort of help/support are you looking/hoping for, as this might get a better response and ideas.

Androgen

He lives with a friend that is also autistic (though higher functioning/less severe) and we're trying to find some way of helping them to be more independent, as we have a younger severely autistic boy to look after, so having to go over a lot to help cook, clean, take them out to appointments etc. is getting too stressful, though we don't know if they'll qualify for any kind of carer (and we don't have a lot of money to pay for one) to help with that, or if there's any way of finding out why it is they're struggling so we can get them help/therapy to get them more independent

They were also turned down for disabled bus passes (without assessment) which would have meant they could go out to places together (without a carer to ask for tickets on buses and talk to drivers) and we don't know if there's a way around that through adult social services or not

Geoark

Hi @Androgen

It sounds like they would benefit from a personalised care and support plan. You can find out more at https://www.thinklocalactpersonal.org.uk/personalised-care-and-support-planning-tool/What-is-personalised-care-and-support-planning/

I am going to ask @Jean_Scope if she has any ideas as I have found her very knowledgable on this sort of thing.

Jean_OT

Hi @Androgen

Thanks to @Geoark for inviting me to join this discussion.

It is difficult to form more than an initial impression about someones functioning and needs on the basis of a forum post but I think how you describe your brothers functioning seems compatible with his diagnosis of moderate autism.

Of course it could be that your brother has some other sort of learning disability or specific learning difficulty in addition to his autism, but that might be very difficult to establish, as he is unlikely to be a clinical priority for further NHS assessment. Some families of autistic adults do push for NHS assessment or go for a private assessment in the hope of getting more insight into the functioning of their loved one and ideas for strategies that might help them.

I would suggest that you speak to the Helpline of the National Autistic Society to talk over the best way to proceed: https://www.autism.org.uk/services/helplines/main/contact.aspx

I totally agree with Geoark that having your brother assessed by the local authority with a view to getting a care and support plan in place sounds sensible. It is the outcome of the assessment which will determine if a support worker/carer can be provided. Most people have to contribute something towards the cost of such provision but as your brother is an independent adult that should be calculated on his own means not the means of his wider family.

In the current climate of austerity some local authorities have set the threshold to get an assessment very high so you may need to argue his case for being assessed. If necessary his GP, who sounds supportive, may need to make the referral to the local authority.

If the local authority get the impression that your brother is 'coping' and that as a family you are willing and able to meet his additional needs it is unlikely he will be seen as a priority for any provision. Therefore, you may have to clearly assert that you are no longer able to assist and that your brother needs professional support to continue living independently in the community.

With regards to obtaining a Disabled Persons Bus Pass. These are normally the qualifying criteria, although do please check the exact wording for your local scheme:

Blind or partially sighted.
Profoundly or severely deaf.
Without speech.
Have a disability, or have suffered an injury, which has a substantial and long-term adverse effect on your ability to walk.
Do not have arms or have long-term loss of use of both arms.
Have a learning disability. This is a state of arrested or incomplete development of mind which includes significant impairment of intelligence and social functioning.
Would, if you applied for a grant of a licence to drive a motor vehicle under Part III of the Road Traffic Act 1988, have your application refused, pursuant to section 92 of the Act (physical fitness) otherwise than on the ground of persistent misuse of drugs or alcohol.
You have been refused a driving licence, or have had such a licence revoked, on medical grounds.

I have highlighted the criteria most likely to apply to someone with autism. In truth I think it is going to be difficult to get them to accept that someone who has managed to complete a university education has a "significant impairment of intelligence" However, maybe you could show the criteria to your brother's GP and ask if he thinks your brother meets it. If the GP thinks he does perhaps he would be willing to write a letter of support that might help get a bus pass.

If it isn't possible to get a Disabled Person Bus Pass it might be worth exploring if your local bus company does any form of smart pass or prepayment card which would reduce the need for your brother to interact with the driver.

Best Wishes
Jean

Androgen

Thank you for the advice

I have an older brother with Asperger's and Schizophrenia, and we contacted the adult social care about that, but they refused to help because "you're asking us to do what you already do" and said they wouldnnt help unless we completely stopped helping him (which obviously we can't do) so we weren't sure we'd be able to get any help from them this time either

We're also not sure if he's been referred for further assessment, we were told that either the GP or the Learning Disability team would be in touch, but wenve not had anything so far

Also we applied for a disabled bus pass on that criteria, but were told they don't consider autism to be a learning disability, they consider it a developmental disability (which I don't understand, because they seem to be used interchangeably, and autism is quite often listed under learning disability anyway)

poppy123456

Not everyone who has autism will be diagnosed with a learning disability. I agree that having gone through university then you may find it difficult to proceed any further with this. What you've described sounds like ASD (autism) to me and not a learning disability. The learning disability team will not assess him unless he falls under the criteria for a learning disability and yes you do have to have a low IQ level. There's no different levels of autism anymore, it's just the ASD spectrum scale.

As for the bus pass autism isn't a criteria, it has to be a learning disability and a letter from a GP will not be accepted. It has to be a letter/form from the learning disability team. Without this he will not be able to get the bus pass and the learning disabilities team won't send the letter without being diagnosed.

Geoark

@poppy123456

"There's no different levels of autism anymore, it's just the ASD spectrum scale."

This is not true. DSM V subscribes 3 levels of autism, however this is an american publication and has the most impact there, and in research.

Diagnosis in the UK usually follows ICD-10 and this allows for further breakdown of the ASD diagnosis into 7 **** categories: